CP Research Network Director - Registries

Background: The CP Research Network is the largest and most comprehensive collaboration of hospitals and community members working together to improve health outcomes for people with CP. We host the largest community and clinical registries in the US to gather robust and comprehensive data for research and quality improvement. We gather and share lived experiences of community members and measure aspects of the healthcare process to continuously improve health and wellbeing in ways that people with cerebral palsy value most. We focus research and consumer educational content on the health and wellness outcomes and ensure the CP community is included in the research process, the development of education materials, quality improvement initiatives and implementation of current clinical care pathways.

Position Description: The Registries Director will be responsible for all aspects of data definition, collection, curation, development, and reporting for our Clinical Registry (n=10,000+) and our Community Registry (n=2500+). The Registries Director will report to the VP of Research and Quality.

Responsibilities include:

• Manage the Registries:
  • Assure that the registries are used to answer the questions and provide the fundamental value for which they have been defined.
  • Engage sites and investigators to advance the registries toward their strategic objectives in the current plan.
  • Participate in teams for the use of the registries in academic research, clinical trials, quality improvement, clinical decision support and population health, and advocacy.
• Oversight and Development of Data Definition, Data Collection, Data Transfer and Data Quality:
  • Clinical Registry:
    • Review, lead, refine and expand CPRN Registry Elements to support the research, quality improvement and outcomes sought by stakeholders.
    • Partner with sites and CPRN EPIC consultant to ensure data collection is being built to populate the registry.
    • Work with the DCC staff to implement, version, and assure the quality of the Registry Elements.
    • Oversee the implementation, revision, and quality of Registry Elements in the CPRN REDCap.
    • Work with sites implementing alternative data collection to assure consistency and completeness of the implementation of CPRN Registry Elements.
    • Lead the effort with site Bioinformaticists to regularly transfer EMR data to the DCC.
  • Community Registry:
    • Measure, monitor and improve the conversion of MyCP participants to Community Registry research participants. Work with the social media team to improve engagement of MyCP members in research in the Community Registry.
    • Work with investigators providing studies for the Community Registry (CR) to assure alignment of REDCap survey design with existing CR Registry Elements and Appropriate IRB approvals.
    • Develop and oversee CR Registry Elements and Manual of Operations.
    • Refine and expand the core longitudinal surveys hosted in the Community Registry to maximize the participation, data quality and value.
    • Develop consumer level reporting from the CR
    • Consultation on informatics, analysis, reporting and data quality measures with University of Pittsburgh DCC
  • Registry Tools and Reports:
    • Collaborate with key stakeholders to develop and refine tools, reports, meta data and dynamic queries of the registries.
    • Assure the availability, documentation and appropriate access controls for the registries.

Experience, Skills, Qualifications: The breadth of data collection methods and integration with clinical care requires a unique combination of skills. It may be hard to find someone who is a perfect fit from the perspective of academic research knowledge, clinical environment, technology, CP domain knowledge and program development.

Experience:

• Performance in clinical research or quality improvement environment including experience authoring manuscripts published in high quality journals.
• Leadership and collaboration with senior leadership and clinicians in a quality improvement or research setting.
• Use of databases and statistical packages for curation and analysis of registry data.
• Clinical knowledge in a complex medical condition (preferably in cerebral palsy) to understand key concepts, patient characteristics, interventions and outcome measures.

Skills and Qualities:

• Willingness and capability to span low level tasks and high-level program development.
• Excellent interpersonal skills and communication skills to build and maintain trust and relationships with patients, families, clinicians, researchers and health system leaders
• Strong persuasion and negotiation skills; the ability to engage, challenge, and develop a consensus within a dynamic organization -- a consummate team player with extraordinary critical thinking skills.
• An entrepreneurial spirit and drive; willingness to take risks and advocate for new ideas coupled with a commitment to measurement and accountability.
• Personal qualities that include a present and optimistic personality, integrity, creativity, resilience, flexibility, tenacity, receptivity to feedback and high energy

Qualifications:

• 5 plus years in medical research, quality improvement or bioinformatics
• Masters or PhD in clinical epidemiology, bioinformatics, public health, rehabilitation or data science preferred. Others considered with appropriate experience.

Location: we are a virtual office – anywhere in the continental U.S. U.S. citizenship required.

Salary and Benefits: To be determined based on the relevant experience of the applicant. Salary to be competitive for geographic region and similar nonprofit positions. 80% to 100% FTE availability required.

Timeline: Resumes will be collected in August 2024 with interviews starting in September.

Send cover letter and resume to: jobs@cprn.org
View job post online: https://cprn.org/